Improving Prediction of Long-Term Care Utilization Through Patient-Reported Measures: Cross-Sectional Analysis of High-Need U.S. Veterans Affairs Patients

This article examines the relative merit of augmenting an electronic health record (EHR)-derived predictive model of institutional long-term care (LTC) use with patient-reported measures not commonly found in EHRs. We used survey and administrative data from 3,478 high-risk Veterans aged ≥65 in the U.S. Department of Veterans Affairs, comparing a model based on a Veterans Health Administration (VA) geriatrics dashboard, a model with additional EHR-derived variables, and a model that added survey-based measures (i.e., activities of daily living [ADL] limitations, social support, and finances). Model performance was assessed via Akaike information criteria, C-statistics, sensitivity, and specificity. Age, a dementia diagnosis, Nosos risk score, social support, and ADL limitations were consistent predictors of institutional LTC use. Survey-based variables significantly improved model performance. Although demographic and clinical characteristics found in many EHRs are predictive of institutional LTC, patient-reported function and partnership status improve identification of patients who may benefit from home- and community-based services.

Glenoid Component Position Does Not Affect Short-Term Clinical and Radiologic Outcomes in Total Shoulder Arthroplasty

Background: Malpositioning of the glenoid component in total shoulder arthroplasty (TSA) remains the primary source of loosening. The purpose of this study is firstly, to quantify postoperative glenoid component position in patients having a TSA and secondly, to explore whether glenoid component radiolucency is associated with glenoid position, clinical outcomes and patient-reported measures in the short-term (two year) follow-up period. Methods: This study was a sub-study of a larger clinical trial that included patients who underwent a TSA and who were randomized into two different glenoid types with a minimum two-year follow-up period. Post-operative radiographic assessments (six weeks and two years) were used to measure glenoid component position (version, inclination, offset) and humeral head centering anterior–posterior (AP) and superior–inferior (SI), and to assess glenoid component radiolucent scoring (modified Lazarus). Pre-operative X-rays were used to measure glenoid version, inclination and Walch classification. Patient-reported measures (PROMs) included the EQ-5D health slider and the Western Ontario Osteoarthritis (WOOS) and American Shoulder and Elbow Surgeons (ASES) score and were captured at baseline and two years postoperative. Clinical outcomes including range of motion and complications were also documented. Statistical analysis included t-tests and regression modeling. Results: Ninety-one patients with an average age of 69.9 ± 6.2 years were included in this study. Glenoid component position improved significantly in version (−19.4 ± 8.6° to −17.7 ± 8.5°; p < 0.045) and inclination (11.5 ± 7.1° to 5.9 ± 6.3°; p < 0.00001) from preoperative to six weeks postoperative. Glenoid component offset in SI and humeral head centering in AP remained unchanged throughout the follow-up. Radiolucency (Lazarus classification) was recorded in 21 cases (17.3%) with a Lazarus score of 1 (15 cases) and 2 (6 cases). The EQ-5D health slider, WOOS and ASES, and ROM confirmed continuous improvements from the preoperative scores to the two-year follow-up (p < 0.05). Regression models showed no correlation between glenoid component radiolucency at two years and the postoperative week six glenoid component position; however, female gender was a significant variable. Conclusion: Glenoid component changes from its original native glenoid were observed following TSA. Glenoid inclination was improved more than version from baseline, and the humeral head remained well-centered in AP and SI at two years. Radiolucency of the glenoid at two years is not negatively associated with PROMs or component position; however, female gender was identified as a significant predictor and warrants further investigation. Complications are not associated with glenoid position or radiolucency, but longer-term follow-up is required.

Surveillance and epidemiology of SARS-CoV-2 viral variants in the United States, May-October 2021 (Preprint)

UNSTRUCTURED Background: Genomic sequencing of SARS-CoV-2 positive specimens has been critical in detecting and tracking variants of concern. Methods: We analyzed a recent cohort of SARS-CoV-2-positive specimens collected from patients in over 5,000 testing locations across the United States. These data were combined with an online pre-screening questionnaire on symptoms, exposures and vaccination status to examine epidemiological trends related to virulence, transmissibility, and vaccine effectiveness. Results: Between May and October 2021, 177,253 patient specimens were sequenced and approximately 400 different SARS-CoV-2 lineages identified. Within this cohort, 152,373 (86.0%) were aged 16 and older, and the percent of these patients that were fully vaccinated increased from 4.5% in May to 42.3% in October. Although positivity rates of fully vaccinated patients increased, unvaccinated patients were 30.4% (95% CI 26.5-34.3%) more likely to report shortness of breath and 34.0% (95% CI 32.1-35.9%) more likely to report fever, shaking, or chills. Conclusions: Our nationally representative database of patient-reported measures and lineage data from SARS-CoV-2 specimens provides useful data to track emerging trends and lineages of concern.

The use of patient-reported measures in epilepsy care: the Calgary Comprehensive Epilepsy Program experience

The regular use of patient-reported measures (PRMs) has been associated with greater patient satisfaction and outcomes. In this article, we will review the Calgary Comprehensive Epilepsy Program's successful experience with PRMs in both clinical and research settings, as well as our current challenges and future directions. Our experience will illustrate that is feasible and convenient to implement PRMs, and especially electronic PRMs (ePRMs), into epilepsy clinics. These PRMs have direct clinical and research applications. They inform clinical decision making through readily interpretable scales to which clinicians can expeditiously respond. Equally, they are increasingly forming an integral and central component of intervention and outcomes-based research. However, implementation studies are necessary to address knowledge gaps and facilitate adoption and dissemination of this approach. A natural symbiosis of the clinical and research realms is precision medicine. The foundations of precision-based interventions are now being set whereby we can maximize the quality of life and psychosocial functioning on an individual level. As illustrated in this article, this exciting prospect crucially depends on the routine use of ePRMs in the everyday care of people with epilepsy. Increasing ePRMs uptake will clearly be a catalyst propelling precision epilepsy from aspiration to clinical reality.

Swedish translation and cross-cultural adaptation of eight pediatric item banks from the Patient-Reported Outcomes Measurement Information System (PROMIS)®

Background This study is part of the Swedish initiative for the establishment of standardized, modern patient-reported measures for national use in Swedish healthcare. The goal was to translate and culturally adapt eight pediatric Patient-Reported Outcomes Measurement Information System (PROMIS®) item banks (anger, anxiety, depressive symptoms, family relationships, fatigue, pain interference, peer relationships and physical activity) into Swedish. Methods Authorization to translate all currently available pediatric PROMIS item banks (autumn, 2016) into Swedish was obtained from the PROMIS Health Organization. The translation followed the Functional Assessment of Chronic Illness Therapy translation recommendations with one major modification, which was the use of a bilingual multi-professional review workshop. The following steps were applied: translation, reconciliation, a two-day multi professional reviewer workshop, back translation, and cognitive debriefing with eleven children (8–17 years) before final review. The bilingual multi-professional review workshop provided a simultaneous, in-depth assessment from different professionals. The group consisted of questionnaire design experts, researchers experienced in using patient-reported measures in healthcare, linguists, and pediatric healthcare professionals. Results All item banks had translation issues that needed to be resolved. Twenty-four items (20.7%) needed resolution at the final review stage after cognitive debriefing. The issues with translations included 1. Lack of matching definitions with items across languages (6 items); 2. Problems related to language, vocabulary, and cultural differences (6 items); and 3. Difficulties in adaptation to age-appropriate language (12 items). Conclusions The translated and adapted versions of the eight Swedish pediatric PROMIS item banks are linguistically acceptable. The next stage will be cross-cultural validation studies in Sweden. Despite the fact that there are cultural differences between Sweden and the United States, our translation processes have successfully managed to address all issues. Expert review groups from already-established networks and processes regarding pediatric healthcare throughout the country will facilitate the future implementation of pediatric PROMIS item banks in Sweden.

Outcome assessment in cleft lip and palate surgery

Outcome assessment for cleft management is complex due to the diverse elements of function affected by the condition, and the variation in effect on patients over time. Methods of assessment are broadly separated into objectively measurable variables that can be independently validated, and patient-reported measures that are necessarily more subjective. Validated tools to evaluate outcomes are now widely adopted for speech and facial growth, with other areas of outcome presenting greater problems in development of suitable measures. In recent years, the emphasis of outcome evaluation has turned towards greater reliance on patient-reported measures that require extensive preliminary research to develop if a high degree of validity is to be ensured. Existing outcome measures that are widely used are described in this chapter, along with a perspective for future trends and a forthcoming internationally applicable tool for comparative studies (ICHOM).

Genital Self-Image and Aesthetic Genital Surgeries: Novel Perspectives Across the Cisgender and Transgender Spectrum

Genital focused body image concerns or negative genital self-image is a common experience across the gender spectrum, including cisgender and transgender populations. Such concerns can result in lower psychological and sexual well-being. In this article, it is proposed that the development of genital self-image concerns may be partly explained by the theoretical framework of cisgenderism. This theory proposes that there are only two genders – men and women – and these are dictated solely by the appearance of the genitals. Any deviation from these two categories can result in discrimination, which particularly impacts transgender individuals. An increasing number of cisgender and transgender people are seeking out aesthetic genital procedures to alleviate genital self-image concerns (and gender dysphoria in transgender populations). The growing body of research suggests that cisgender and transgender men and women are relatively satisfied with the results of their genital procedures. However, this research is limited by a lack of standardized and validated patient-reported measures to evaluate surgical outcomes. Furthermore, despite negative genital self-image being a key motivator for surgery, it is often not included as an outcome measure. In this article, recommendations are proposed for conducting higher quality evaluation studies of aesthetic genital procedures in cisgender and transgender populations. Moreover, future research and clinical directions are suggested to assist transgender men and women who choose not to undergo genital gender confirmation surgery. The vast majority of transgender individuals do not have this surgery and so are in great need of support in managing their gender dysphoria and negative genital self-image.